Exploring the experiences of mothers on their daily occupations while having a child on the spectrum of autism

Laminette, Elana (2013-03)

Thesis (MOccTher)--Stellenbosch University, 2013.

Thesis

ENGLISH ABSTRACT: Prior to the commencement of this study, an abundance of information on the topic of autism spectrum disorders and its symptoms, its prevalence and the effect on the family’s psychosocial- and emotional wellbeing were available. However, studies to describe the impact of a child with autism spectrum disorder on the occupations of families were limited, especially within the South-African context, and the researcher could find no information describing the impact of such a child specifically relating to the daily occupations of their mothers. This qualitative study used a phenomenological approach to explore how mothers with children on the spectrum of autism experience the impact of the child on their own daily occupations, and the meaning they derive from these experiences. Purposive sampling was used in selecting eleven mothers whose children attended therapeutic and medical follow up at one of the tertiary public hospitals in the Western Cape. In-depth semi-structured interviews following an interview guideline were conducted with each of the participants. The interviews were audio taped, and thereafter transcribed verbatim. A process of open coding was used to analyze the transcribed interviews. The findings emerging from the data-analysis process, uncovered three themes, namely ‘mothering as an identity’, mothering as an occupation’, and ‘making sense and moving forward’. These themes emphasized the immense changes the mothers had to face with regards to their occupational engagement, as well as on a personal level due their children’s diagnosis of autism spectrum disorder. It also brought to light the factors influencing the experiences and actions of mothers, shaping their mothering identities, as well as their needs and barriers in terms of successful participation in their everyday occupations. The study reported on the occupational risk factors these mothers face, as well as the enabling elements with regards to successful and meaningful occupational engagement. Occupational therapists working with children should be especially conscious of the inseparable relationship between the occupations of the child they are treating, and the occupations of the primary caregiver when implementing therapy programs. Only through ensuring the successful and meaningful participation in occupations of both the mother and the child, the occupational therapist will be able to improve the health and well-being in the one or the other. Careful selection and collaborative goal setting when planning therapy programs are therefore essential.

AFRIKAANSE OPSOMMING: Verskeie studies het in die verlede rapporteer oor die diagnose, simptome en prevalensie van outisme spektrum steurnisse. Studies wat die impak van hierdie toestand op die emosionele en psigo-sosiale welstand van families ondersoek het, was ook volop. Beperkte inligting, veral binne die Suid-Afrikaanse konteks, was egter beskikbaar om die impak van ‘n kind op die spektrum van outisme op families se deelname in alledaagse aktiwiteite te ondersoek. Met die aanvang van hierdie studie, kon die navorser geen inligting vind wat spesifiek na die impak van ‘n kind met outisme op hulle moeder se deelname in alledaagse aktiwiteite ondersoek ingestel het nie. Hierdie kwalitatiewe studie het gebruik gemaak van ‘n phenomelogiese benadering om die ervarings van moeders, met ‘n kind op die spektrum van outisme, te ondersoek rakende die impak van hierdie kind op die deelname van hulle eie alledaagse aktiwiteite, asook die betekenis wat die moeders aan hierdie ervarings kon heg. Doelgerigte steekproeftrekking is gebruik in die seleksie van elf moeders wie se kinders terapeuties en medies opgevolg word by ‘n tersiêre publieke hospital in die Wes-Kaap. In-diepte, semi-gestruktureerde onderhoude is gevoer met elk van die deelnemers aan die hand van ‘n onderhoud riglyn. Die onderhoude is op band opgeneem, waarna dit verbatim getranskribeer is. ‘n Proses van oop kodering is gebruik om die getranskribeerde onderhoude te analiseer. Die resultate wat verkry is gedurende die data-analise proses, het die volgende temas uitgelig, naamlik ‘moederskap as indentiteit’, ‘moederskap as beroep’, en ‘om sin maak en aan te beweeg’. Hierdie temas het die geweldige veranderinge vir die moeders in terme van deelname aan hulle alledaagse aktiwiteite, sowel as op persoonlike vlak, beklemtoon. Die faktore wat die deelnemers se ervarings en aksies, en dus hulle identiteit as moeders beïnvloed het, was ook geïdentifiseer. Die resultate het ook die struikelblokke en behoeftes van hierdie moeders in terme van suksesvolle deelname aan hulle alledaagse aktiwiteite, aangedui. Die studie het die risiko faktore, sowel as die elemente wat benodig word vir suksesvolle deelname aan alledaagse aktiwiteite, uitgelig. Arbeidsterapeute werksaam in die veld van pediatrie, behoort bewus te wees van die onafskeidbare verhouding tussen die deelname aan alledaagse aktiwiteite van die kind wat hulle behandel, en dié van die primêre versorger. Slegs wanneer suksesvolle deelname aan aktiwiteite deur beide die kind én die moeder verseker word, kan die welstand en gesondheid in die een of die ander bevorder word. Die seleksie van terapie doelwitte in samewerking met die familie en primêre versorger, is dus kardinaal.

Please refer to this item in SUNScholar by using the following persistent URL: http://hdl.handle.net/10019.1/80256
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